Eyes/Corneas/Colobomas/TV

Sorry about the length of time between posting, folks. Between me graduating from University and starting a full time music teaching job, getting Kyle ready to graduate high school and Kennedy to transition meetings for going to her new, humungous middle school, things have been busy. I'll post more about these events soon. I want to talk eyes today.

Since the last post, Kennedy had a visit to the IWK Children's hospital for ophthamology. They said she is doing fabulous, her corneas look wonderful (surprisingly, they said, with her facial palsy and one not closing all the way for all these years), they gave her a new prescription (minor changes) and took some WICKED pictures of her optic disc, showing her two colobomas (these are the areas in white in the pictures below where there is incomplete tissue development). I am going to post the picture here but also on her main web site as I think it really speaks to the resiliency and ability to compensate that our children display. To think there's that much missing and she manages to see and do as well as she should with not only the vision issues but everything else going on in her little body - well I think it's just unbelievable. Yeah, I know. I'm biased.
Here is a picture of those colobomas (you can click on it to enlarge as well)


During the time we were down there, we had an opportunity to have a visit with dear friends Jeanie & MacKenzie. As some of you know, Kennedy & MacKenzie have been friends since they were babies. MacKenzie was named as this year's Champion Child for the IWK Children's Hospital for the Children's Miracle Network Telethons that take place last week of May/first week of June. She has been quite the little celebrity, on TV, going on trips in Canada & the US, doing various interviews and attending other functions. We are so proud of her and happy to see CHARGE syndrome awareness increasing because of this amazing little girl.

So they had a visit at the hospital as MacKenzie had an appointment the same day, but they also had to go to the TV station for Mac to do an interview. Kennedy was SO excited, asking a million questions, etc. MacKenzie had done enough of this in the past little while that she was as cool as a cucumber. Kennedy was asking, "Do we say 'Action!'?" and telling everyone she was an actress. It was really cute. The director gave her a 'director's' chair to sit in and told her that she would get to say, "Action!" when it was time and he counted down to her. She was just tickled.

After the interview the host of Breakfast Television, Jayson Baxter, took us all around for a tour of the newsroom set for CTV Live at Five and the news at 6, and introduced us to a bunch of folks we see on TV every night. Kennedy thought it was great (so did I to be honest!). I just want to say that the folks at CTV were generous and kind, giving up their precious busy work time to do a little something special for the girls. As we were leaving, Jayson grabbed a camera operator outside and said, "Kennedy, we're going to get you on TV" and taped a short spot with her telling everyone her name, where she was from, and to watch the IWK telethon. It meant the world to her and she was so excited to see herself on TV the next morning.

Here are a couple of pictures from our visits with MacKenzie and from the TV station visit:

Kennedy and MacKenzie - at the IWK, the first place we ever met...


Kennedy & MacKenzie with Jayson Baxter from BT (super nice guy!):


Kennedy & MacKenzie with Steve Murphy, long-time host of the Evening News at 6 (and native Saint Johner):


Kennedy & MacKenzie with Liz Rigney, who works on CTV's Live at Five:

She's Off!

Well, I dropped the little miss off at Deaf Camp on Sunday. She was so excited for the past few months and on the way up, but she decided she wanted mama to stay when I was getting ready to leave. Uh oh...
The woman I hired to be her helper is fantastic though, and got her mind changed again; they were laughing and looking at Hannah Montana magazines as I drove off. It's Tuesday and I haven't heard anything so I'm assuming she's settled in and having a ball. I hope.

As for me on the other hand, I can't stop thinking about her; I even woke up in the night last night for a couple hours wondering how she was making out. Is she warm enough? Did she have enough to eat today? Did they remember to remind her about sunscreen and bugspray? Is she dry? (it's been raining like a bugger here since I drove her up) What a mess I've been. I know she's going to be fine but I can't stop myself from these incessant thoughts. There are more than fifty staff for 48 or 49 campers AND I hired someone to give her an extra hand specifically. So why can't I calm down? I'd love to know...maybe it'll get easier as the week goes on.

I was online watching her little videos the FIRST NIGHT she was gone. I thought I'd get all this work done and get all caught up on my sleep, etc. Yeah, not so much. Sure, I've left Kennedy lots of times before, even up to eight or nine days but it was always with my mom...this is different. She will need to be a lot more independent and I have always been a worrier that other people won't "do it like mom does" - which is ridiculous because she does fine at school, other day camps, etc, where I am not there. I think it's the whole camp, sleeping away overnight, all personal care, etc that I'm stressing about. I really am going to try and keep busy this week and relax a bit as well but it is HARD!

Pictures from our trip to Nova Scotia

All this studying is keeping me away from the blog lately; here, finally, are the pictures from our trip last month to Nova Scotia, where we spent a few days with dear friends Jeanie & MacKenzie and then went into the hospital for Kennedy to have her g-tube taken out and stoma closed. There are photos from their swim at the White Point Beach Resort, at Jeanie's House, and at the IWK. As always, remember if Flickr! is being naughty and says "no such photos found!", hit F5 on your keyboard to refresh the screen and that should set everything right.